Posted on May 9, 2022
In recognition of May 13th being Xeroderma Pigmentosum Awareness Day in Connecticut, State Representative Kathleen McCarty (R-38), local community leaders, and family and friends will gather at Waterford’s Town Hall Friday evening to recognize the day and honor Waterford resident Fatima Perez with an official state proclamation signed by the Governor.
Xeroderma Pigmentosum is a rare, inherited genetic disorder characterized by an extreme sensitivity to ultraviolet rays of the sun. Rep. McCarty, who introduced the original legislation during the 2021 session said she was first made aware of the disease by friend and constituent, Fatima Perez. Through her tireless efforts and interest in educating others about XP, Fatima Perez became the Founder and President of XP Groupo Luz de Esperanza, an international support group and informational website that she directs from her Waterford home.
Friday’s ceremony is also a “thank you” to Ms. Perez for her dedication in bringing awareness, hope and assistance to others who suffer with this rare disease.
“The tremendous love, support and effort Fatima puts into everything she does is inspirational, and thanks to her advocacy we now recognize this important day and bring increased awareness of Xeroderma Pigmentosum statewide,” Rep. McCarty said. “I am elated that we will be able to celebrate Fatima and her momentous achievement in person on May 13th.”
May 13th as Xeroderma Pigmentosum Awareness Day in Connecticut
Friday, May 13th
Town Hall, Board of Education Conference Room
5:00 p.m.
This event is free and open to the public.
If you are unable to attend but would still like to contact Rep. McCarty, please call her office at: 860-842-4200 or via email at: Kathleen.McCarty@housegop.ct.gov
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Rep. McCarty represents the 38th district of Waterford and Montville.